So I'm getting the 18F FDG in preparation for my pet scan, and the radiologist is hiding his body behind 5 inches of lead, God forbid he gets exposed to any of this radiation. My early stage five year prognosis has always been good, like 96% good, and my ultrasounds and x-rays have been clear, so I've never actually been allowed to do a follow up pet scan until I had the sudden urge to beg for it this year. So it came as a surprised to my entire family when exactly 3 years after i completed chemo in July 2019 and being completely asymptomatic, I've been diagnosed with stage 4 breast cancer with ogliometastasis to my liver in multiple lesions. Three tumors were detected in my liver, the largest being 4.8cm and my CA15.3 is at an appalling 280 (regular range <30). My condition is now incurable with an on paper 5 year prognosis of 29% (recently increased from 22% - thank you science!).
When the nurse called me back to the clinic to see my report, she lied to me saying that my liver lit up in the scan, but not to worry it could possibly be an infection in the liver. I scoured all edges of the internet on what kind of infection it could be, in denial of what it most likely is, when i realised late at night my fingers sore from 6 hours of googling that there were no other possibilities. I knew what the doctor was going to say, but i maintained cautiously optimistic because that really is the best, possibly only, coping mechanism for when the biggest pile of shit is about to hit the fan. When i walked in she told me straight away that it's cancer without a doubt, the FDG uptake is very high, and I realised that the nurse told me a little white lie because that's what people without cancer do, they say things like "it will be fine", "you are doing so great", "it could be this", "it could be that", "have you tried celery juice?"...because it takes a relationship of great intimacy to discuss the stone cold truth, disappointments, failures, and soul crushing sadness. How could I expect a receptionist disguised as a nurse to deliver me the message that theres 71% chance i'll be dead within 5 years? When I asked her "how can this happen when I had a stable scan 6 months ago?", even my doctor with her backpack full of medical degrees, fellowships, TV interviews and prestigious BC accolades had nothing productive to say. "Let's do the ultrasound first" she said, ushering me out of the consultation room, I lay down to do the exam and i knew she preferred to talk to me this way because she didn't have to look at my face. My legs were shaking because my body was in shock, and i couldn't breathe because there were 3 nurses around me and they breathed so much pity into the air around me it was suffocating and disgusting. I was disgusted at how small and passive I was in the universe. I didn't understand how all my cancer fighting efforts in the past 3 years, which had become the sole focus and purpose of my existence, had failed.
The anger i experienced in the following few weeks was intense. I was upset that I paid for really good medical care but not once did any of the doctors listen to my hopes of being ultra aggressive with cancer prevention. Everyone reassured me that my statistics are golden and I'm as good as new. When I told my family that 30% of early stage BC patients have a metastatic recurrence, they all told me that I need to listen to my doctors, and that my constant worry is unhealthy. Now I'm not sure whether my constant worry attracted me to this reality, or whether this outcome was in my cards all along.
What came next was a liver biopsy because we had to make sure whether or not the tumours were still hormone receptor positive, which they thankfully were. Time wasted on the wrong medicine can sometimes be a strong factor on one's prognosis. I requested to be put under but was refused because they needed me to hold my breath while the liver was being punctured in order to prevent bleeding. I had never been so terrified in my life, of the pain, of my prognosis, of the sympathetic looks everyone gave me all tangled into one big huge mess. Thankfully my oncologist was also incredible as usual. He refused to put an expiry date on my life, and he told me that there were drugs upon drugs upon drugs to try for my condition, and it'll be a long long time before I need to think about the end. I don't know how true this is, but it seems now that building hope and confidence is the only way to make existing days worth living.
I shared my latest diagnosis with my closest friends only and was swamped in love and TLC. I was anxious and depressed for a week or two. I lost all appetite and 7 pounds along with it. I deleted instagram because I could no longer share my life with people who didn't genuinely care about me. I felt defeated and ashamed. I hated the friends who ghosted me, and I hated the people who gossiped about my cancer in order to feel better about their own lives. Jerry couldn't stop crying, and Bevy clung to me with dear life as if she somehow knew that something was wrong.
About 2 weeks in, I started feeling better with twice daily meditations. I put down my phone. I daydreamed. I allowed myself to dream for crazy things. I told myself I deserve more money, more handbags, more love, a long life, adventures, things i didn't dare to be greedy about in the past. I stopped talking so much and listened to myself more. I learned not to let negative thoughts pass into my subconscious. And I learned that my thoughts could help shape my future and my prognosis. Currently I've been put into menopause with monthly Zoladex shots, and have daily oral medications of Letrozole and Ribociblib. I eat tons of fibre, soy, green tea, vit c, probiotics, minimal meat, exercise almost daily, and try my absolute hardest to enjoy my life every single day. It's not really much different from my lifestyle before the re-diagnosis, but i guess that the intention means everything in regards to mindset change. If you tell yourself this is healing you, it will. If you remain doubtful, then the efforts remain in vain.
As with all stage 4 diagnoses, the crossing from free and limitless potential to terminal and restrictive life is so extremely difficult. I almost don't know how to do this but I do, because power always manages to break through desperation. When I ask myself, how much do I want to live? I see myself sad and pale and bald and mutilated all over with no eyebrows, and still I scream to the creator I DO I DO! So I write my will, assign godparents to my daughter, and start practicing belly laughs. Some friends don't ask questions because they worry I don't want to talk about it, the truth is I do want to talk about it all day long everyday non-stop but I don't think there's anything I can say to make anyone without terminal cancer understand how i now feel. Even my regular cancer fam is not in my league now, I need other people who are actively dying to commiserate. Telling my spouse my wishes for my child after my death and visualizing end of life suffering is just not something most people can stomach well without brushing off (ie. "don't worry it's not going to happen").
I originally wanted to remove myself from the internet and to free myself from judgement or my addiction to judgement once and for all, however I decided to post this update and to continue talking about cancer because I've realised that this blog still receives many views, likely from other cancer patients looking for support, and i owe it to the community to let you all know that I am alive and well. Despite how rough the past 3 months have been, through turmoil I've grown again. I know there's a lot of negativity in this update because I wanted to keep it real, I was depressed and you'd be kind of crazy if you weren't. But things are looking a lot better recently and I'm going to keep sharing with you guys later. Stay tuned.
xo
Carrie